Some Privacy, Please

Robert Feinstein

 

A FEW YEARS AGO, blind people living in the New York area received letters from one of the principal organizations for the blind, announcing a study on privacy. Participants would earn a small amount of money for taking part in the study. My blind friends found the whole idea ridiculous. "It shows how out of touch the Lighthouse is," Alice said. "We don't have any privacy." When I mentioned the letter to Diana, a blind friend living outside of New York, she said, "Privacy? What's that?"

These reactions made me stop and think. I have to concur that blind people, by virtue of their disability, do not often have the luxury of keeping things private. Let me give a few examples.

I have sighted readers who help me with my mail, since I have no way of knowing who it is from, much less what's in it, unless I spend a lot of time with the Optacon* and I don't always feel up to doing this. One day I received a magazine in the mail. Figuring it was an advertisement, I showed it to a reader, a nice woman but conservative. "Where did you get this?" she asked in horror. "It's full of pictures of naked men and tons of penises. It's disgusting! This must be a mistake! I'll throw it out."

What to do? I wanted to keep the magazine so that my one gay reader could describe it to me, but if I acted too interested, what would Jean think? I hatched a plan. That night, I'd conveniently forget to ask her to takeout the garbage. When our reading session was over, however, Jean was quick to be helpful: "Oh, I'll throw out your garbage." "Umm," I said, "I'm running short on garbage bags. I'll dump it downstairs later and keep the bag to use again." "Nonsense," she said, "You always buy too much of everything! You have too many bags as it is, and your medicine cabinet is filled with deodorant. I'll throw it out on my way downstairs. No trouble." So out it went.

Second example: I was due to receive an unusually large check and did not want a certain reader to know about it because he always made comments that left me feeling uncomfortable when I got checks in the mail. That day I painstakingly went over my mail and was able to identify the check. I put it in my wallet. After we finished our reading I remembered that I needed to identify some receipts I had accumulated. I took them out of the change-purse compartment of my wallet so that Ron could look at them for me. Suddenly, I remembered the check. I found two pieces of paper of equal size in my wallet. Which one was the check? What was the other one? The last thing I wanted was find that the check had fallen out of my wallet.

I felt both pieces of paper and took out the one I was sure was something else. "Ron, what's this?" I asked. "A check for $3,500," he told me. "Gee, must be nice to get such big checks!" My damn luck, I thought to myself, the one person I didn't want to see this check, and look what happens. I took the check and asked, "But what's this other piece of paper, Ron." "Oh," he said, "That's a receipt from a dog food order."

Probably the most poignant example I know of how blind people are impacted by lack of privacy happened to a friend of mine. After Paulette had ended an affair with a blind lover she went for a pregnancy test and was told that she would get the results by mail. When she received a letter from the clinic she needed to know what it said, but didn't want her family to know. With a heavy heart, she took the paper out of the envelope and put it in her pocket. On the subway from Brooklyn to Manhattan, she asked who was next to her. Often sighted people won't answer when a blind person asks, but a woman answered Paulette, and they started to talk. Paulette pulled the paper out of her pocket and gave it to the woman. "Please read this to me," she said. The woman took the paper, and gasped. "This is private, she said." "It's okay," Paulette reassured her. "It says . . . it says . . . you're pregnant," the woman told her. Paulette took the paper back and thanked the woman.

"But why did you ask a stranger?" I demanded. "Well, I had to know somehow," Paulette replied, "and I figured at least I would never see her again.

Although it's a big problem, reading material isn't our only privacy issue. The absence of privacy touches every aspect of our lives. If I want to go to a gay club, for instance, but don't know where it is, I have to ask a stranger to help me. This can be embarrassing and even frightening.

And then there's the problem of my . . . sneakers. I'm really kind of hung up about them. Getting shoes that fit is a horrible chore for me. Most give me blisters. When I find a pair I like, I wear them until they are nearly ready to disintegrate. One black friend told me my shoes looked like "early welfare" and when she saw me months later said, "now they look like late welfare."

I don't really care what they look like, but there was a practical problem. On one shoe, part of the sole needed to be glued, because the rubber was pulling away. Even shoemakers refused to touch them They said the shoes were too old. My friend Grant glued them for me every two weeks or so, but he had left for Colorado. I asked a guy who lives in my apartment building, but he refused to help. "Don't be so cheap," he told me. "Throw them out and buy new ones!"

"Well," I thought, "I'll just have to find a way to do it myself." A blind friend had told me about Googone, a liquid that gets glue off surfaces. I bought a bottle of Googone and a bottle of contact glue. I put some glue on my finger and managed to get it on the right part of the shoe. Before the glue could harden on my finger I grabbed the Googone and got it off. I put the shoe on the windowsill to dry. I had done a beautiful job.

True, I couldn't use Krazy Glue like Grant, and true, it had taken me almost twenty minutes to get all the glue off my fingers, but I had done it. I wished I could have shown my beautiful glue job to some sighted people, but they wouldn't have understood. So now I glue my own shoes. I am proud to say I glued one two days ago, and it is wonderful!

The whole question of privacy and asking for help sometimes makes me crazy. I would have paid anything to get a sighted person to glue that shoe, but I couldn't. So I found a way. Not all problems are so easily solved, however.

Of course privacy is an issue not only for blind people, but for those who need help to care for themselves because of a whole range of disabling conditions. So the next time you read your bank statement or your phone bill, reach for a glass of water, write a check, or use the bathroom, think of those who may not be able to manage those ordinary life tasks without some help. Far too often, privacy is a luxury for those who are able-bodied. Why is it, I wonder, that the richest country on earth cannot afford to enable all of its citizens to attain as much privacy and independence as they desire and are capable of sustaining?

________________

*A NOTE ON THE OPTACON:

The Optacon is a machine that enables a blind user to read print, albeit very slowly. Speeds of about fifty-to-sixty-words-per-minute are extremely good, but rare. The machine consists of a camera which you move along a line of print with your right hand while placing your left index finger on a tactile array of 144 vibrating pins. As the camera sees a letter, the shape of the letter (give or take) is made by the vibrating pins. Certain letters, like small "g" and small "y," hit the finger away from the tip. Letters like "c" and "e" hit in the middle, while letters like "b" and "d" hit the tip of your finger. You learn to read by context, because the letters are easy to confuse.

I use it to check envelopes that I have typed, or make sure my printer is working. Depending on the print, I can sometimes read the return address on an envelope. Sometimes I can also read the amount of a check, but this is difficult. I worked for over eight months with a private teacher to learn to use it the Optacon. I had terrible problems learning to keep the camera straight when tracking across the line, and I found it difficult to know how to change the amount of light hitting the page so that print was clearer. I love the Optacon, and wish it were still being made. It has really taught me patience. I had gotten pretty good at the machine, but now I only use it for very specific things and my skill has diminished.

©2001 Robert Feinstein

Bob Feinstein and Harley live in Brooklyn, NY. Search BENT's Table of Contents and Archive for other articles by Bob.

 

 

BENT: A Journal of CripGay Voices/May 2001